Research in Integrated Care: The Need for More Emergent, People-Centred Approaches.

The International Foundation for Integrated Care (IFIC) recently celebrated its 20th International Conference (ICIC20) through a virtual event that brought together patients and carers, academics, care professionals, NGOs, policy-makers and industry partners from across the global integrated care community [1]. The International Journal for Integrated Care (IJIC) used this opportunity to host a workshop on published research in integrated care, specifically to reflect on the quality of existing scientific enquiry. A lively discussion on the current state of integrated care research concluded that there remained significant shortcomings to current methodologies - for example, in their ability to provide the depth of understanding required to support the knowledge needed to best inform policy and practice, particularly when addressing people-centredness. In part, the debate recognized how the nature of existing research funding, and prevailing attitudes and preferences towards certain research methodologies, were partly to blame (as has been noted by IJIC previously [23]). The workshop debated how research and researchers must change their focus in order to better contribute to the tenet of people-centred integrated care.

Improving Person-Centredness in Integrated Care for Older People: Experiences from Thirteen Integrated Care Sites in Europe.

INTRODUCTION: Although person-centredness is a key principle of integrated care, successfully embedding and improving person-centred care for older people remains a challenge. In the context of a cross-European project on integrated care for older people living at home, the objective of this paper is to provide insight at an overarching level, into activities aimed at improving person-centredness within the participating integrated care sites. The paper describes experiences with these activities from the service providers' and service users' perspectives. METHODS: A multiple embedded case study design was conducted that included thirteen integrated care sites for older people living at home. RESULTS: Service providers were positive about the activities that aimed to promote person-centred care and thought that most activities (e.g. comprehensive needs assessment) positively influenced person-centredness. Experiences of service users were mixed. For some activities (e.g. enablement services), discrepancies were identified between the views of service providers and those of service users. DISCUSSION AND CONCLUSION: Evaluating activities aimed at promoting person-centredness from both the service providers' and service users' perspectives showed that not all efforts were successful or had the intended consequences for older people. Involvement of older people in designing improvement activities could ensure that care and support reflect their needs and preferences, and build positive experiences of care and support.

Using the Project INTEGRATE Framework in Practice in Central Coast, Australia.

INTRODUCTION: Integrated care implies sustained change in complex systems and progress is not always linear or easy to assess. The Central Coast integrated Care Program (CCICP) was planned as a ten-year place-based system change. This paper reports the first formative evaluation to provide a detailed description of the implementation of the CCICP, after two years of activity, and the current progress towards integrated care. THEORY AND METHODS: Progress towards integrated care achieved by the CCICP was evaluated using the Project INTEGRATE Framework data in a mixed methods approach included semi-structured interviews (n = 23) and Project INTEGRATE Framework based surveys (n = 27). All data collected involved key stakeholders, with close involvement in the program, self-reporting. RESULTS: Progress has been mixed. Gains had most clearly been made in the areas of clinical and professional integration; specifically, relationship building and improved collaboration and cooperation between service providers. The areas of systemic and functional integration were least improved with funding uncertainty being an ongoing significant problem. The evaluation also showed that the Project INTEGRATE framework provided a consistent language for CCICP partners and for evaluators and consistent indicators of progress. The framework also helped to identify key facilitators and barriers. DISCUSSION AND CONCLUSION: The findings highlight the willingness and commitment of key staff but also the importance of leadership, good communication, relationship building, and cultural transformation.

Formative Evaluation of the Central Coast Integrated Care Program (CCICP), NSW Australia.

INTRODUCTION: Integrated care has been posited as an important strategy for overcoming service fragmentation problems and achieving the Quadruple Aim of health care. This paper describes the Central Coast Integrative Care Program (CCICP) a complex, multi-component intervention addressing 3 target populations and more than 40 sub-projects of different scale, priority and maturity. Details are provided of the implementation including activities undertaken for each target population, in the context of the Central Coast Local Health District (CCLHD) strategies and priorities. Key lessons are drawn from the formative evaluation. METHODS: A mixed methods approach to the formative evaluation was taken. Key stakeholders, professional staff with an in-depth knowledge of the program, were invited to complete surveys (n = 27) and semi-structured interviews (n = 23). The evaluation employed co-design principles with dialogue between CCICP partners and researchers throughout the process and sought to achieve a shared understanding of the dynamic context of the program, and the barriers and enablers for the various interventions. KEY LESSONS AND CONCLUSION: Seven interdependent key lessons have been identified. These distil down to the setting of clear objectives aligning with all the goals of partners, developing strong relationships, leadership at multiple levels and communication and the building of a common language.

Asking the right questions: scoping studies in the commissioning of research on the organisation and delivery of health services.

Scoping studies have been used across a range of disciplines for a wide variety of purposes. However, their value is increasingly limited by a lack of definition and clarity of purpose. The UK's Service Delivery and Organisation Research Programme (SDO) has extensive experience of commissioning and using such studies; twenty four have now been completed.This review article has four objectives; to describe the nature of the scoping studies that have been commissioned by the SDO Programme; to consider the impact of and uses made of such studies; to provide definitions for the different elements that may constitute a scoping study; and to describe the lessons learnt by the SDO Programme in commissioning scoping studies.Scoping studies are imprecisely defined but usually consist of one or more discrete components; most commonly they are non-systematic reviews of the literature, but other important elements are literature mapping, conceptual mapping and policy mapping. Some scoping studies also involve consultations with stakeholders including the end users of research.Scoping studies have been used for a wide variety of purposes, although a common feature is to identify questions and topics for future research. The reports of scoping studies often have an impact that extends beyond informing research commissioners about future research areas; some have been published in peer reviewed journals, and others have been published in research summaries aimed at a broader audience of health service managers and policymakers.Key lessons from the SDO experience are the need to relate scoping studies to a particular health service context; the need for scoping teams to be multi-disciplinary and to be given enough time to integrate diverse findings; and the need for the research commissioners to be explicit not only about the aims of scoping studies but also about their intended uses. This necessitates regular contact between researchers and commissioners.Scoping studies are an essential element in the portfolio of approaches to research, particularly as a mechanism for helping research commissioners and policy makers to ask the right questions. Their utility will be further enhanced by greater recognition of the individual components, definitions for which are provided.

The Core Dimensions of Integrated Care: A Literature Review to Support the Development of a Comprehensive Framework for Implementing Integrated Care.

OBJECTIVE: As part of the EU-funded Project INTEGRATE, the research sought to develop an evidence-based understanding of the key dimensions and items of integrated care associated with successful implementation across varying country contexts and relevant to different chronic and/or long-term conditions. This paper identifies the core dimensions of integrated care based on a review of previous literature on the topic. METHODOLOGY: The research reviewed literature evidence from the peer-reviewed and grey literature. It focused on reviewing research articles that had specifically developed frameworks on integrated care and/or set out key elements for successful implementation. The search initially focused on three main scientific journals and was limited to the period from 2006 to 2016. Then, the research snowballed the references from the selected published studies and engaged leading experts in the field to supplement the identification of relevant literature. Two investigators independently reviewed the selected articles using a standard data collection tool to gather the key elements analyzed in each article. RESULTS: A total of 710 articles were screened by title and abstract. Finally, 18 scientific contributions were selected, including studies from grey literature and experts' suggestions. The analysis identified 175 items grouped in 12 categories. CONCLUSIONS: Most of the key factors reported in the literature derive from studies that developed their frameworks in specific contexts and/or for specific types of conditions. The identification and classification of the elements from this literature review provide a basis to develop a comprehensive framework enabling standardized descriptions and benchmarking of integrated care initiatives carried out in different contexts.

Developing a User Reported Measure of Care Co-ordination.

INTRODUCTION: Older people with chronic conditions often receive poor care because of the fragmented way in which their services are delivered from multiple sources. Providers have limited tools to directly capture the views of older people about their experiences of care co-ordination. The study aim was to design and test a survey tool to capture the experiences of older people with chronic conditions regarding how well their health and (where applicable) social care was co-ordinated. METHOD: To inform the questionnaire development, we reviewed the literature on existing surveys and care co-ordination theory, and on the health status of our target audience (people aged 65 or over with one or more chronic conditions and not in hospital or residential institutions). We also consulted stakeholders including those working in health and social care services and those with expertise in the subject area. We grouped questions around experiences of care in three dimensions: care in the home environment, planned transitions in care and unplanned situations. We also designed the questions so they could be mapped onto three recognised dimensions of continuity of care - management continuity, information continuity and relational continuity - as articulated in the international literature. The questionnaire was tested using focus groups and cognitive interviews and piloted with people aged 65 and over with at least one chronic condition, using a postal survey. We used service user records in 32 general practices located in four areas and a population database held by one local authority in England as the sampling frame. RESULTS: The pilot achieved an overall response rate of 27.6% (n = 562 responses). Ninety five percent of respondents answered 30 or more of the 46 questions and three respondents answered fewer than 10 questions. Twenty four items achieved one or more positive correlations greater than 0.5 with other survey items and four instances of positive associations greater than 0.7 were found. DISCUSSION/CONCLUSION: The growing focus on care co-ordination demonstrates the need for a tool that can capture the experiences of patients accessing care across organisational and professional boundaries, to inform the improvement of care co-ordination activities from a patient perspective. Early results suggest that our tool may have a contribution to make in these areas. However, more work is required to test the efficacy of the tool on a larger scale and in different settings, and to find ways of improving response rates.

Radiofrequency modification for inducible and suspected pediatric atrioventricular nodal reentry tachycardia.

INTRODUCTION: AV Node Reentry Tachycardia (AVNRT) is the second most common supraventricular tachycardia (SVT) undergoing pediatric radiofrequency ablation behind accessory pathway reentry tachycardias. AVNRT can be difficult to induce during electrophysiology study (EPS) and dual atrioventricular nodal (AVN) pathways physiology may not be demonstrated in young patients. PURPOSE: This report is the largest single center long term pediatric experience of radiofrequency modification of slow AVN input fibers for inducible or suspected (non-inducible) AVNRT. RESULTS: One hundred thirty-two patients underwent slow input AVN modification from 1993 to 2002. The mean patient age was 13.7 years (4-20 yrs) with 62M/70F. Outpatient tachycardia was documented by ambulatory monitoring in all patients. AVNRT was induced in 98/132 patients during EPS (group A) with mean SVT cycle length of 324 msec (230-570 msec). Initial AVN modification (group A) was successful in 97/98 patients (99%). During 34/132 EPS, AVNRT was non-inducible; dual AVN physiology was present in 19/34 (group B), and 15/34 did not show evidence for dual AVN physiology (group C). These 34 patients underwent empiric AVN modification following discussion with patients' families. Freedom of recurrence from SVT at 1 year was 96% for group A (94/98), 89% (17/19) for group B and 93% (14/15) for group C. 1 major and 6 minor complications occurred. CONCLUSIONS: AVN modification for AVNRT can be performed safely and effectively in pediatric patients with good long-term results. Empiric slow pathway AVN modification for non-inducible SVT results in a high rate of freedom from recurrence of tachycardia.

Integrating care for older people with complex needs: key insights and lessons from a seven-country cross-case analysis.

BACKGROUND: To address the challenges of caring for a growing number of older people with a mix of both health problems and functional impairment, programmes in different countries have different approaches to integrating health and social service supports. OBJECTIVE: The goal of this analysis is to identify important lessons for policy makers and service providers to enable better design, implementation and spread of successful integrated care models. METHODS: This paper provides a structured cross-case synthesis of seven integrated care programmes in Australia, Canada, the Netherlands, New Zealand, Sweden, the UK and the USA. KEY FINDINGS: All seven programmes involved bottom-up innovation driven by local needs and included: (1) a single point of entry, (2) holistic care assessments, (3) comprehensive care planning, (4) care co-ordination and (5) a well-connected provider network. The process of achieving successful integration involves collaboration and, although the specific types of collaboration varied considerably across the seven case studies, all involved a care coordinator or case manager. Most programmes were not systematically evaluated but the two with formal external evaluations showed benefit and have been expanded. CONCLUSIONS: Case managers or care coordinators who support patient-centred collaborative care are key to successful integration in all our cases as are policies that provide funds and support for local initiatives that allow for bottom-up innovation. However, more robust and systematic evaluation of these initiatives is needed to clarify the 'business case' for integrated health and social care and to ensure successful generalization of local successes.

Should general practitioners purchase health care for their patients? The total purchasing experiment in Britain.

Until relatively recently, general practitioners (GPs) have been allowed to work independently, with no requirement to consider the resource implications of their referral and prescribing decisions. In order to align the interests of GPs with the overall objectives of health systems a number of countries have introduced primary care based capitation, funds pooling and budget holding either as experiments or as an overall policy. Are these experiments and policies likely to work? This paper presents evidence from the UK total purchasing experiment, which was the first major quasi-market development in the NHS to be independently evaluated from the outset. Total purchasing gave volunteer groups of practices freedom to purchase all hospital and community health services for their patients. The evidence suggests that whilst GPs have great potential as purchasers, they also have considerable limitations. The expectation that they will be able to improve the quality of patient experience of care, or to alter the use of resources, may not be generally realised. GP-based purchasing may be more appropriate where the task is to alter the balance or location of care between hospital and extramural settings. However, budgetary incentives are not 'magic potions' which have similar effects on behaviour wherever they are introduced. Holding budgets and having independent contracts, while important pre-requisites for being taken seriously in a quasi-market, were not sufficient for effective total purchasing. The paper concludes that health systems should not only value innovation and experimentation and encourage learning from evaluative research; they should also recognise the importance of supportive circumstances for any innovation to effect real and sustained change.

PCT commissioning. About the size of it.

Primary care trust commissioning is not advanced and there is little evidence of PCTs influencing hospital services. Any further NHS reorganisation would hamper the development of commissioning. PCTs need to engage more GPs in the task of commissioning services. PCTs' ability to move work round on a cost per case basis should strengthen their hand in commissioning from hospitals.

PCT merger. Building bridges.

Primary care trusts can be torn between the need for critical mass and the danger of losing local vision and ownership; mergers are politically unpopular and fraught with difficulty. A review of Trafford South PCT stakeholders enabled a range of organisational models to be tested. The result was the creation of a 'joint and integrated management structure' for the two Trafford PCTs.

Perspectives on the policy 'black box': a comparative case study of orthopaedics services in England.

There has been much recent debate on the impact of competition on the English National Health Service (NHS). However, studies have tended to view competition in isolation and are controversial. This study examines the impact of programme theories associated with the health system reforms, which sought to move from a dominant target-led 'central control' programme theory, to one based on 'market forces', on orthopaedics across six case-study local health economies. It draws on a realistic evaluation approach to open up the policy 'black box' across different contexts using a mixed methods approach: analysis of 152 interviews with key informants and analysis of waiting times and admissions. We find that the urban health economies were more successful in reaching the access targets than the rural health economies, although the gap in performance closed over time. Most interviewees were aware of the policies to increase choice and competition, but their role appeared comparatively weak. Local commissioners' ability to influence demand appeared limited with providers' incentives dominating service delivery. Looking forward, it is clear that the role of competition in the NHS has to be considered alongside, rather than in isolation from, other policy mechanisms.

A Time for Action on Health Inequities: Foundations of the 2014 Geneva Declaration on Person- and People-centered Integrated Health Care for All.

Global inequalities contribute to marked disparities in health and wellness of human populations. Many opportunities now exist to provide health care to all people in a person- and people-centered way that is effective, equitable, and sustainable. We review these opportunities and the scientific, historical, and philosophical considerations that form the basis for the International College of Person-centered Medicine's 2014 Geneva Declaration on Person- and People-centered Integrated Health Care for All. Using consistent time-series data, we critically examine examples of universal healthcare systems in Chile, Spain, and Cuba. In a person-centered approach to public health, people are recognized to have intrinsic dignity and are treated with respect to encourage their developing health and happiness. A person-centered approach supports the freedom and the responsibility to develop one's life in ways that are personally meaningful and that are respectful of others and the environment in which we live together. Evidence suggests that health care organizations function well when they operate in a person-and people-centered way because that stimulates better coordination, cooperation, and social trust. Health care coverage must be integrated at several interconnected levels in order to be effective, efficient, and fair. To reduce the burden of disease, integration is needed between the people seeking and delivering care, within the social network of each person, across the trajectory of each person's life, among primary caregivers and specialists, and across multiple sectors of society. For integration to succeed across all these levels, it must foster common values and a shared vision of the future.

The commissioning reforms in the English National Health Service and their potential impact on primary care.

Reform of the National Health Service in England will increase power and responsibility for family doctors. They will have a larger role in planning and buying health care including control of substantial budgets. This article examines the likely implications of the proposed reforms for primary care, and in particularly for family doctors. This article considers the effect of the new clinical role in commissioning health care, changes to the accountability structures, and the effect on competition and integration within health services. It also considers the effect of new financial incentives and the possibility of creating conflicts of interest.